In many ways, Jerika Bolen is your average 14-year-old girl. Her summer hobbies include going to the mall, having sleepovers with friends and baking cookies. She loves alternative music and spending time on Facebook.
Unlike any other teenager you may know, Jerika suffers from the incurable disease called Spinal Muscular Atrophy Type 2 or SMA. It impacts the motor nerve cells in the spinal cord, which affects her walking, eating and breathing. Jerika experiences severe chronic pain in her lower back and hips.
On a good day, Jerika’s pain level is at a seven, on a scale of 1-10. She is wheelchair bound and has to use a ventilator for 12 hours a day to assist with her breathing. When reflecting on how the pain feels, Jerika states “when it’s too much, it’s too much."
Jerika has been living with this fatal condition since she was a baby. At one time, she used to be able to raise her hands above her head. Sadly, the disease causes her to have weak bone structure, which limits her mobility to her hands and face.
She and her mother, Jean, have exhausted all available options to help find a cure. Over the past few years, Jerika has been in and out of the hospital more than 30 times. She is able to maintain by taking several medications and frequently using pain killers.
After a recent surgery last year, Jerika decided that she was ready to stop the medication, and the pain. She had been thinking about this longer than anyone knew. Jerika understood that this decision would inevitably end her life.
Jerika and Jean have made hospice arrangements for August, only a short month away. As difficult as it was, Jerika said she needs to do what is best for her. Jean is not certain how she will deal with her daughter’s death. She fully supports Jerika saying, “If she is at peace, I have to find a way to make peace with it”.
It makes you wonder if a girl so young is capable of making that type of choice; however, her mother silences any naysayers, “People don’t realize what it takes to keep her alive. I know she is only 14, but she is old enough to decide. It’s her body and her pain”.
Before Jerika leaves, the community planned a lavish prom for her on June 22. She was surrounded by family, friends, and supporters. Everyone gathered to celebrate her life and dance. This one night, allowed Jerika to get away and focus on being happy.
Although each day is a constant fight and struggle, Jerika expresses thoughts of optimism saying “I try to be as happy as possible”. She also anxiously awaits the release of physical pain. “I don’t think I will ever know the reason God picked me to have this disease; maybe, it’s because I am strong enough to handle it”.
